EB GOES TO WASHINGTON!
EB advocate Alex Silver testified in front of Congress to give a parent’s perspective on the painful daily life of a child with EB. He also addressed the need for new avenues of funding EB research and discussed ways to work together with the government and the FDA to streamline the approval process for viable treatments. You can view a video and article about EB and the hearing that appeared on abcnews.com. EBMRF Vice President Andrea Joseph was also interviewed for the article. You can view the video at http://abcnews.go.com/Politics/video/skin-blisters-kill-11226257 and the story here.

In addition, you can view Alex's complete oral testimony at http://help.senate.gov/hearings/hearing/?id=d132692d-5056-9502-5da9-23c77808a20f (skip to minute 103) and we have attached a copy of his written testimony.

Thanks to the Faro Foundation
The EBMRF is happy to announce that thanks to a generous grant from The Faro Foundation, we have fulfilled the wishes of several families with critical needs, such as a motorized cart, specialized bed, portable wheelchairs, and other basic necessities. We are happy to be able to offer this support to the EB community. Image »

Great news from Congress!
National EB Awareness Week (the last week of October) was formalized in late 2006 through resolutions passed by Congress and the Senate. Special thanks to Rep. Tim Bishop, Rep. Peter King, Senators Schumer and Clinton for their support in pushing this important legislation through, as well as volunteers Dennise Joseph, Gena Grushovnik, Barbara Stowe, Shirley Jones, Robin Eckworth, Allyson Anderson, Madeline Weiner, Don Peshkur and all the families who made their voices heard! For a list of planned events and how to get involved, visit www.ebrelay.org

---

CelEBrity Poker
The Bravo channel's Celebrity Poker highlighted the EBMRF with two well known actors, Scott Wolf and Jeremy London, both playing in support of the organization. A total of $10,000 was raised from the evening.

---